Table 5 Consultation exercise participants and feedback

CHIP research network meeting, discussion led by the first author

Around 25 participants, comprising researchers, clinicians, and user representatives

Relatable findings

Remain a need for outcomes besides quality of life

Interest in the specific diagnoses

Emphasize on the symptoms that are targeted in the outcomes

Interesting with the associations between phenomena and outcome measure

National palliative care meeting, discussion led by the last author

Around 30 peers, most of whom worked in adult palliative care

Astonished by the high number of PROMs related to PPC, compared to the limited number of PROMs which are applied in clinical adult palliative care

National quality of life research network, discussion led by the first author

Around 40 peers, most of whom works in health research and higher education

Discussing the pros and cons of the scoping review methodology and how to handle the high number of identified reports

Lack of psychometric properties among the extracted data, but consensus regarding our decision to firstly scope the identified PROMs and current research

National PPC meeting, poster presentation led by the first author

Around 200 peers, comprising mostly health professions, but also researchers and people with user experience

Acknowledging the relevance of PROMs to ensure patient-centered and family-centered care

Experiences with PROMs included the use of visual reporting of pain